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Christmas letter -- A look back at 2003 What an unbelievable year we have had! This has been a very emotional time for us as we approach the one-year anniversary of Katie’s diagnosis. Here’s what happened this time last year... ...Katie was complaining of back pain since late November 2002. This is the beginning of many trips to the local ERs, a multitude of tests, and visits with various specialists during the month of December. No one could find anything wrong. Katie refused to walk, slept most of the day, wasn’t eating, was constantly moaning and complaining that her back hurt. With Christmas nearing, we were desperate to find out what was wrong with our little girl, yet no one seemed to care. Katie's (now former) pediatrician told John and I to “Give her some Motrin and wait until the holidays were over.” It was a urologist who realized how sick Katie was after reviewing her blood work results, and told us to immediately go to Children's Hospital of Philadelphia (CHOP). Katie was admitted after nine hours in the ER at CHOP. She had a bone marrow aspiration in the morning. Later that afternoon, at 4:30 pm on Christmas Eve, we were told that Katie had Acute Lymphoblastic Leukemia (ALL). Katie started her chemotherapy and IV fluids to flush her kidneys of the toxin build-up from the cancer. The doctors were only giving her two months to live without treatment.They found that Katie also had compression fractures in three vertebrae. At day seven of her chemotherapy treatment the oncologists were surprised and delighted to tell us that she was in remission. We all came home after 21 long days and nights at CHOP. Katie’s third birthday soon followed, but she was too sick to celebrate.... Katie is following standard treatment in study CCG-1991. She has gone through months of intense chemotherapy, spinal taps, bone marrow aspirations, and blood transfusions. She experienced many unpleasant and painful side effects from the chemotherapy. She was very ill during that time and was unable to walk or even crawl for several months. Getting her to take her meds was quite a challenge. Now, no matter how awful it tastes, she doesn’t complain. Most of the side effects she experienced have gone and her hair is growing back nicely. Katie still has osteoporosis, yet is expected to regain all of her strength and abilities. Four months ago, Katie started the “Maintenance” phase of treatment. She will continue to receive spinal taps and intrathecal Methotrexate (IT MTX) every three months, IV Vincristine (VCR) every month, Dexamethasone (DEX) five days a month, oral MTX weekly, Mercaptopurine daily, Bactrim two days a week, Miralax as needed, Tums daily, and biweekly blood draws to check her blood counts, until her treatment ends in February of 2005. Every time she gets her VCR, IT MTX, and DEX, Katie goes through a day or two of vomiting, and weakness, fatigue and moodiness for a week or so. This has become our “normal” life, which we never thought we would get used to. Katie is our hero!! I don’t know if I could handle all that she has been and is still going through. She endured months of intense treatments, physical therapy and isolation from other children. To look at her now, you would never know how sick she was earlier this year. She enjoys swimming, cooking, ballet, playing with her friends and her baby brother, who was born on July 31st. Katie is such a wonderful big sister and Kyle just adores her. Katie is looking forward to having a birthday party when she turns four in January. We are thankful for each and every day we have with each other. I spend more time with my children and less time worrying about having the house in order. Every night, when I lay in bed with Katie, we talk about our day, say our prayers and she falls asleep in my arms. I cherish every moment. John has his special daily moments with Katie, also. Her favorites are going for a walk or playing baseball with her daddy. This Thanksgiving was a very quite night spent at home with my parents and grandfather. Little did we know that Pop-Pop-Pop (as Katie called her great-grandfather) would be leaving us a week later. John F. Smith was 93 years young. He was a kind man who loved life and made everyone laugh. We’ll miss him. It’s been a difficult and tearful year for us. Thank you to all who came to our aid with meals, grocery runs, house cleaning, gifts, cards, e-mails, letters, visits, phone calls and prayers. We are truly blessed to have so many caring and giving people in our lives, and we are so very grateful for everything you have done for us!! We couldn’t have gotten through this year without you. Many thanks again to those who contributed to the Leukemia & Lymphoma Society’s Light the Night Walk in honor of “Katie’s Wish”, and for all the toys and Christmas gifts donated in Katie’s name for the kids at CHOP. We cherish our families and friends more than ever. Even though we’ve been unable to spend time or talk with many of you this past year, we’ve been thinking of you. We hope that 2004 will be a happy year for all and a time to spend celebrating with family and friends. We wish you a blessed holiday and a happy healthy new year!!! NEXT: January 25, 2004 -- Maintenance #2 (Days 21-70) |
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